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INCLUDE-CDP: Collaboration for Down Syndrome Progress

About this study

The INCLUDE-CDP clinical trial improves the health and well-being of people with Down syndrome by building and coordinating strong community ties.

We want to learn more about people with Down syndrome by recruiting and enrolling people for research studies. We want to understand how to help everyone with Down syndrome stay healthy and happy from the time they are born all the way through their adult years.

At St. Jude Children’s Research Hospital, we focus on understanding health and well-being outcomes for young children with Down syndrome and their families. 

  • Infants and toddlers ages 0–2 years old may take part, with or without a cancer diagnosis.
  • A parent also takes part to provide information. 

People who join the study will have yearly in-person visits for up to 5 years. For children, the study will include:

  • Measures of thinking, language, and motor skills
  • Measures of early social and play skills 
  • A medical exam, including height, weight, and heart rate 
  • A small blood sample (optional)

Parents will complete ratings of child behavior, development, and social communication. Some parents may be asked to give a saliva sample. 

What we learn from this study may help improve health and quality of life for people with Down syndrome. 

Eligibility overview

  • Diagnosis of Down syndrome (Trisomy 21)
  • 0–2 years old
  • Able to take part in study activities in person
  • Parent, caregiver, or legally authorized representative able to provide consent, complete questionnaires, and allow review of medical records

Request a referral

The above information is intended to provide only a basic description about a research protocol that may be currently active at St. Jude. The details made available here may not be the most up-to-date information on protocols used by St. Jude. To receive full details about a protocol and its status and or use at St. Jude, a physician must contact St. Jude directly.

Overview

Full title:

INCLUDE-CDP: Investigation of Co‑occurring Conditions Across the Lifespan to Understand Down syndrome Project’s Collaboration for Down Syndrome Progress Program

Study goal:

To study health, development, and co‑occurring conditions in people with Down syndrome across the lifespan, and to build a long‑term research resource to support future treatments and care

Diagnosis:

Down syndrome (Trisomy 21)

Age:

0–2 years old

Clinical trial categories:

Down Syndrome

For physicians and researchers

Patients accepted to St. Jude must be referred by a physician or other qualified medical professional. Learn how St. Jude can partner with you to care for your patient.

 

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